There were several red flags in your post…but the condition I suspected may have been rare in your area so I needed to find out just how rare …one of the first pieces of information I found was a news story about a man, found on the streets of St Petersburg in June of 2005. This man was engaged in unusual behavior, wearing only wet shorts, and proclaiming he was God. He became agitated/violent/beligerent, had to be pepper sprayed, and subdued. He was not under the influence of alcohol. The man was “Bakered” for observation. Recreational/experimental drug use was ruled out. Prior to this event, this man was young, a University of Florida student with straight A’s, and an excellent athlete…I’m sure if he had been an older man, he would have been diagnosed with Alzheimer’s and institutionalized but (because of his age?), the doctors’ looked further and were able to diagnose and treat him for a different condition.

This “case study” suggested that yes, although the condition I suspected was rare, it was recognized in your mom’s area.

Red Flag Number 1. Based on my own experience, I always suggest that when there is a change in health that one look for side effects of medication (as some of you so wisely suggested) because doctors fail to do this. I considered that here…but couldn’t get past the fact that your mom went from a healthy women to someone with multiple bacterial infections within months (the uti’s and the stomach infections).

This was of interest because I recently read of a woman who had recurring bladder infections, only to learn that a previously undiagnosed “condtion” was causing those infections. She was told by one doctor that of the patients the doctor treated, 1/3 with recurring bladder issues also had this condition. Now uti’s aren’t the same thing as bladder infections but they are very closely related.

Red Flag Number 2. I was on predisone for a sore throat a number of years ago and experienced very serious side effects from it. Also, I knew a woman who had to be hospitalized for depression, a side effect of the prednisone...in both cases, the prednisone was a small dose and only taken for 10 days! For those reasons, I pay attention whenever I see literature discussing the dosage/long and short term side effects of presnisone…When I saw the prednisone on the list of meds, I took note! And I looked in the months after she took this med…couldn’t see red flags anymore…there were red banners waving.

The decline in her mom’s occurred RAPIDLY in the months after taking the prednisone.
Prednisone is a steroidal therapy and is often prescribed to reduce inflammation, but in your mom’s case it was (I think) prescribed to destroy the stomach flora, or the bacteria in the stomach. Problem is prednisone can also weaken your immune system, worsen infections or reactivate infections that a patient recently recovered from. But what is significant here, is that patients with a certain “condition” should not be given prednisone because it can seriously impair the immune system, causing it to enourage the “condition” to grow, instead of curing it! I suspect that is what has happened in your mother’s case.

Red Flag Number 3. Sticking my neck out here because don’t know when the atenolol was prescribed, but it was prescribed for a high heart rate and the “condition” I have in mind can cause a very high heart rate.

Although diagnosed with AD, meds aren’t helping….
Just as a note, although your mom’s diet is/was not good, cereal and cheese are very good sources of vitamin b12…that’s not to say she isn’t deficient, and that a deficiency wouldn’t contribute to her problem, but as far as I know, vb12 doesn’t cause multiple body infections. It is not uncommon for people with b 12 and anemia to have problems with their blood pressure…but the problems are with LOW blood pressure and your mom’s doctors (hopefully) wouldn’t have prescribed a very heavy duty anti-hyperintensive (atenolol) if she was predisposed to those conditions.

I don't think your mom's problem is due to a vitamin b12 deficiency for several reasons....a healthy person stores several years worth of vitamin b12 in their body (and up until the bacterial infections, you say your mom was healthy!) so a v B12 is extremely rare (per Mayo Clinic). Also, although your mom's diet was not good, she did eat cereal and cheese, both of which are good sources of vitamin b 12 and most likely an adequate daily supply......a daily supply of vitamin b12 can be obtained in a glass of milk and a cup of raison bran, for instance.

Although a vitamin b12 deficiency could explain your mom's neurolgical symptoms and gait problems, it doesn't explain the bacterial infections, and the fact that her symptoms got rapidly worse several weeks after taking prednisone. And it doesn't explain (correct me if you know otherwise) the continued shaking and trembling that your mother continues to experience.

Multi infarc dementia, a stroke, and alzheimers' disease could account for many of the neurological symptoms...and urinary tract infections can cause depression which in turn can mimic dementia. Multi infarc and a stroke would explain a rapid deteriation of cognition and mobility, bUT they can be detected conclusively in testing (and the doctors didn't report seeing this on her tests) ...unlike alzheimers which develops slowly and as far as I know, cannot be diagnosed conclusively in testing.

The only thing I know of that can explain ALL of the symptoms your mother is experiencing are bacterial infections spread by an infected tick, probably lyme disease but there is some controversy in your area as to what kind of tick infections are prevelent, Lyme's or STARI... by the way, that healthy young football player from Florida State U was diagnosed with Lyme's disease so it is in your area.

On a final note, prednisone should NEVER be given to someone with lyme disease because it makes the condition worse...despite being treated for 4 uti's and a stomach infections with antibiotics, it wasn't until after taking prednisone that your mother developed "non stomach" issues and started taking meds for other symptoms.

Only a doctor who specializes in infectious diseases and who is Lyme Literate can diagnose her...but if it were my mother, I would certainly consider consulting with this kind of specialist. I have read that some people see as many as 30 different doctors, in a number of different specialties before getting an accurate diagnosis.

Because lyme infections are fairly common in the urinary system, they can do a Lyme dot assay (done through Igenex labs), which detects the Lyme organism (Borrelia burgdorferi) in the bladder. Keep in mind that there is no one conclusive test for lyme's and that a LLMD sometimes bases diagnosis on symptoms alone.

Just wanted to say that, initially, I only popped in to read a few posts on this board and did not expect to "remain"...so my apologies if I've overstayed my welcome!

I do hope that all of you find the answers to your questions...from my experience it takes an open mind and alot of research. I would hope that you would look outside the box for your answers and question everything your are told.

Bethsheba.....you are most welcome on this board...if it wasn't for you I would never have thought to ask my dr. for a Lyme test.You are very passionate about getting the word out about Lyme...and that is Very Much appreciated.

I think if my dr. knows what good for him he won't argue with me about letting me have a Lyme test!I decided that I'm gonna tell him my neurologist suggested it(haha!)...he should agree to do it then...we'll see!

That was some very good information you posted to Linda.It's just so tough nowadays to get drs. to look at the Whole picture...they don't seem to care like drs. used to.

Linda's mom is going thru a horrible time..I hope they will get to the Root of what's wrong.I think everybody's input is valuable when it comes to health issues.Doing nothing and not enough is to me Not Acceptable when it comes to a person's helth and quality of life......I'm sure her mom's drs. would be looking to find the right answers if it were their mothers who were in her mom's situation.

Anyways you must post back either here or on the brain and nervous systems board...you are a most valuable person here with your wealth of knowledge concerning so many aspects related to peolple's health.

Thank you for you understanding, your support, your compassion, and the info regarding vitamin b12 and tests you were so willing to share. I have learned much from your posts, and feel badly about not addressing each and every one!! But I am so very, very concerned about Linda's mom, and I wanted to get info out as soon as possible so I "neglected" to follow up to other posts the way I normally would.

Although lyme's can be treated/cured, I believe the prednisone may have placed Linda's mom in an advanced stage and if so, immediate diagnosis and treatment is critical. People die from lyme's. As I've mentioned, I live in a high risk state...it was one of the first states in which Lyme Disease was identified and diagnosed, and as a result I do know people who were undiagnosed for years and are now living with the crippling effects. Interestingly enough, we are also considered the Multiple Sclerosis Belt of the Midwest...which suggests to me that many have lyme's but have long since been misdiagnosed as many symptoms overlap or mimic the other.

I do hope that you pursue the possibility of lymes...if it's not lyme's, you may lose some money. If it is lymes and it's left untreated, you may lose your life. Money can be replaced, but your health and your life cannot! But again, I would encourage you to seek out a Lyme Literate Medical Doctor as gps and other specialists often use tests/labs that are out of date and unreliable.

Quote:

Originally Posted by scout316

....It's just so tough nowadays to get drs. to look at the Whole picture...they don't seem to care like drs. used to....

You summed this up very well! There are lots and lots of reasons for this, but that is for another thread.

Quote:

....Anyways you must post back either here or on the brain and nervous systems board...you are a most valuable person here with your wealth of knowledge concerning so many aspects related to peolple's health.

You are so very kind to say this but what I've learned, I've learned from the people on these boards, and I've confirmed what they've said by checking multiple sources. A famous columnist, I believe, once said that you learn more from listening, than by talking. It's my turn to listen...I have much to learn from you and from others on this board.

Take care, Scout. I've appreciated (and agreed with) your posts...I do so wish you the very best in health and happiness!!

Re: Vitamin B12 deficiency and extremely tired - the injections don't help much

Thank you Bethsheba for looking into all of this!!! What can I say??? Wow! It never occurred to me that she could have something like that. She has never showed a rash or anything. I know not all people do. I think I am going to see what the B-12 says first, then try to narrow this down. It seems hard to believe she was bitten by a tick...she hardly ever went outside and worked all the time. I guess it's possible...not sure.

I don't think your mom's problem is due to a vitamin b12 deficiency for several reasons....a healthy person stores several years worth of vitamin b12 in their body (and up until the bacterial infections, you say your mom was healthy!) so a v B12 is extremely rare (per Mayo Clinic). Also, although your mom's diet was not good, she did eat cereal and cheese, both of which are good sources of vitamin b 12 and most likely an adequate daily supply......a daily supply of vitamin b12 can be obtained in a glass of milk and a cup of raison bran, for instance.

Although a vitamin b12 deficiency could explain your mom's neurolgical symptoms and gait problems, it doesn't explain the bacterial infections, and the fact that her symptoms got rapidly worse several weeks after taking prednisone. And it doesn't explain (correct me if you know otherwise) the continued shaking and trembling that your mother continues to experience.

Multi infarc dementia, a stroke, and alzheimers' disease could account for many of the neurological symptoms...and urinary tract infections can cause depression which in turn can mimic dementia. Multi infarc and a stroke would explain a rapid deteriation of cognition and mobility, bUT they can be detected conclusively in testing (and the doctors didn't report seeing this on her tests) ...unlike alzheimers which develops slowly and as far as I know, cannot be diagnosed conclusively in testing.

The only thing I know of that can explain ALL of the symptoms your mother is experiencing are bacterial infections spread by an infected tick, probably lyme disease but there is some controversy in your area as to what kind of tick infections are prevelent, Lyme's or STARI... by the way, that healthy young football player from Florida State U was diagnosed with Lyme's disease so it is in your area.

On a final note, prednisone should NEVER be given to someone with lyme disease because it makes the condition worse...despite being treated for 4 uti's and a stomach infections with antibiotics, it wasn't until after taking prednisone that your mother developed "non stomach" issues and started taking meds for other symptoms.

Only a doctor who specializes in infectious diseases and who is Lyme Literate can diagnose her...but if it were my mother, I would certainly consider consulting with this kind of specialist. I have read that some people see as many as 30 different doctors, in a number of different specialties before getting an accurate diagnosis.

Because lyme infections are fairly common in the urinary system, they can do a Lyme dot assay (done through Igenex labs), which detects the Lyme organism (Borrelia burgdorferi) in the bladder. Keep in mind that there is no one conclusive test for lyme's and that a LLMD sometimes bases diagnosis on symptoms alone.

Good luck, Linda. I wish you and your mother the very best.

Bethsheba

Hi Bethsheba

Firstly let me say you are very welcome here your info is very valuable in the mix and it is grand that you are passionate about making others aware of Lymes well done ......It gets hard when so many things can have the same symptoms......We dont have Lymes here that I am aware of but many present with the symptoms of it so I guess when can exclude it from our list in Australia LOL.........

And i would like to add that it is very kind to do some much work for Lindas mum that is appreciated I am sure...... well done once again........

There is if you dont mind some things I would like to add to your above post re B12 if thats ok?

B12 deficiency is very common it is often misdiagnosed for other things (the some thing as Lymes more common than realized because it goes undiagnosed)

The best source of B12 is sardines (yuk) and meats it is only ever found in animal products like milk It maybe in cereals but they would be fortified not natural..

B12 deficiency cause trembling,shaking, weakness I had them (I was actually a real mess both physically & mentally not to mention emotionally I even had personality changes was a very different person I am return back to my usual ME state)I went through truck load of doctors & every test known to man they even missed my deficiency because it was low normal...

B12 deficiency can cause infections as it affects the immune system some people will come down with everything and anything while they are deficient... not to mention slow wound healing
H-pylori and many other stomach bacterial infections can cause B12 problems(there are a great many reasons why someone can become deficient)The treatment used for the Hpylori only worsens the condition, antibiotics and PPI's.........
B12 deficiency can cause a rapid heart rate for sure as it plays havoc with folate rendering it useless therefore upping homocystiene levels in turn affecting the cardivascular system.....B12 problems wreck havoc on the vascular , nervous system, musculoskeletal, genitourinary, gastrointestinal, immunologic, and blood systems........

One can be low normal with B12 and then have somthing like prolonged H-pylori the start with treatment and it will take your levels down really quickly..... For example mine went from 320-130 in 9 months by then I was having severe memory loss,speech difficulties, severe panic attacks,short of breathe,tachycardia,pallpitations, couldnt find my words and would diagree and really become arguementitive.....plus many more things but they were really hard for my family...

There are all sort s of mdication that interfere with absorption of B12 for example metformin for diabetes and There are also other medicines used zantac for heartburn.....
There are other medications that will mask the deficiency like folate for large blood cells ,diamox for tremors they may treat the symptoms but the deficiency lingers cause more damage and eventually the medication doesnt work any more......

Any one who has an autoimmune disease is more likely to have PA

I think the time line you put together for Linda was amazing thankyou for taking the time to pass on your useful info I will be doing some searching on Lyme...

I hope you have found the info I have posted useful I just thought you might like to know some of this........I have lived with the deficiency for many years howver I dont class myself deficient theses days.......And I look forward to my shots every week

...I hope you have found the info I have posted useful I just thought you might like to know some of this...

Rainbows End,

I thank you for your post, but I am familiar with many of the things you and the other posters have mentioned.....I simply did not take the the time to address these issues here when there were other more pressing things to discuss.

I also did not take the time to explain that in addition to prednisone, I have taken some of the other medications that Linda's mom has taken so I am, perhaps, more familiar with the pharmacology and the side effects than some. Interestingly enough, I took prescription medications for GERD and for stomach issues for over 30 years because I was misdiagnosed....as is so typical, the doctors treated my symptoms instead of getting to the root of the problem. I got to the root of the problem with some luck (and with no help from the doctors I saw over the course of those 30+ years)...and accidentally found out what was causing the GERD and other issues in the process. Not every one is so lucky...but then not everyone questions what they've been told and keeps on open mind.

It is difficult for me to see people suffer...I have spent my lifetime trying to ease suffering. But I also know (and have to remind myself frequently) that some people don't want to face reality, and others want to suffer, as crazy as that sounds.

Re: Vitamin B12 deficiency and extremely tired - the injections don't help much

Quote:

Originally Posted by emmaspaws

...It seems hard to believe she was bitten by a tick...she hardly ever went outside and worked all the time....

People can be housebound and still get bitten by ticks...mice, squirrels, rabbits, birds, cats, dogs, and humans can carry ticks. Once ticks have had a meal, they drop off of their host (into another person's clothing, into the grass in the front yard, into the produce at the grocery store, into the next seat on the airplane, etc.).

Three people I knew were bitten by ticks and infected with lyme...they lived in the same metropolitan area and they worked in a very clean medical setting. These people were professional women with little interest in the out of doors and they didn't know how/when they were bitten by a tick.

I suspect that the prednisone has compromised your mother's immune system which means that the sooner you figure out what is going on the better.

This will be my last post as you have information to use should you wish to do so. I hope for the best...

Re: Vitamin B12 deficiency and extremely tired - the injections don't help much

hi everyone
theses 2 b12 threads have been very helpful, a lot of good info shared here.

ive been ill for about 8 years now, the past year ive been going to the doctor to try and find out why ive felt so ill for so long... my symptoms are...

- Always really tired, i wake up after 10 hours sleep and still feel tired, weak and canít walk up a flight of stairs without being out of breath, no energy or motivation to do anything, constant exhaustion.
- Sensitive to heat- if its a bit cold i feel really cold and my hands and feet go numb and purple, and if itís a bit hot i feel really hot and sweat lots.
- Digestive problems.. really noisy stomach growling all the time, inconsistent stools, bad bloating, horrible stomach pain, craving food and feeling hungry all the time (especially sugar and carbs), donít put on weight no matter how much i eat, get really faint and shakey if i donít eat for a couple of hours or sometimes just at random times, this is only relived by eating.
- Heavy and painful periods (eased a bit with the pill), breakouts of spots on face and scalp, excess hair, greasy skin
- chest pain/tightness
- Feeling thirsty all the time (despite drinking lots of water) and having a dry, mouth/dry sore lips but still needing to pass water quite a lot
- Rashes on upper arms
- poor posture/uncomfortable back
- severe sweating, muscle twitches/pulsations
- alcohol affects me alot... legs go funny after only a few sips of beer or wine
- Brain fog, feeling Ďout of ití, not being able to concentrate, forgetting things, vision going funny - a bit dark/patchy light/blurry - colours go darker
- heavy eyes, feel like theyíre trying to cry sometimes
- off balance/clumsyness - clip door frames a lot - busy places and flourecent lights make me dizzy and spaced
- Chronic post nasal drip (a cause has never been found), pressure in the head, tingling, , stiff neck, uncomfortable back, stiffness in lower back
- Lump in front of my right ear/top of jaw which is sometimes sore and glands under chin/top of neck get tender and sore, also had lumps in nose
- Severe anxiety and depression caused by having all of these problems, get nervous about stupid things/panic attacks , no confidence or self worth, social anxiety, difficulty talking to people, easily embarrassed for no reason/blushing Ė like i cant control myself.

now, my doctors tested me for all the basic things and they were all normal.
so shes diagnosed me with IBS and thinks that all my symtpoms are casued by anxiety, im sorry but this is rubbish. my anxiett didnt start unitll a couple of years after i started getting exhausted and the stomach problems began. theres no way anxiety can casue all of these problems.

she also thinks i may have ME, im wating to see a specialist.
i dont think this is right, im almost certain my problems are casued by b12. i had to make the nurse take a blood smaple for b12, becaseu the doctor said there was no need... my result...272.
now my doctor says this is fine, no treatment needed, its normal becasue the range is 140-900. but from what ive been reading here 272 is not normal and not a healthy level.

do people think that low b12 could be casuing me to feel this exhuasted and ill? i think i may have hidden b12 deficiency.. and want to get other peoples opinions before trying to force my doc to do more test...

Re: Vitamin B12 deficiency and extremely tired - the injections don't help much

Hi helpwanted! You've certainly come to the Right place!Welcome!

Okay...Yes you're B12 level is too low!!!! Next:An MMA(methylmalonic acid test)would be Highly Advisable and a Homocysteine test....is either od these two test levels are elevated then you have an occult(hidden)B12 deficiency.Did you get your folic acid tested also?If not you need that test too.

Stomach issues are very apt to go along with B12 problems...and IBS fits right in there!All the other blood labs(like hemoglobin,hematocrit)can be fine and you still are low on B12.

What is ME?Did you mean MS?

Also do you have a glossy tongue(glossitus)or have trouble swallowing sometimes?

Any pins'n needles feelings in your fingers/toes along with the coldness?

Your symptoms are very consistent with a low B12 level.Also are you around the age for peri-menopause(this can start 10 years before menopause).....and some of your symptoms seem to suggest that.

When your B12 is in the lower range(like yours is)a hematologist would run those tests I mentioned,because it has been knowm that patients under 400(the lab my dr. uses says 200-1100 is the normal range)will have s ome symptoms and patients with a level under 300 will have many symptoms and need to be tested with the MMA,folic acid and homocysteine tests to look for a hidden B12 deficiency.Most MDs won't do it unless you request it,but a blood dr.(hematologist)will always do those tests.

Do not feel like your asking too much from your dr.Your dr. is getting paid to do tests and help you get well!Please get those other tests!!!If they come out fine then I would just go to the health food store(GNC,etc.)and get B12 sub~lingual(methylcobalamin) and start taking that.Don't start it 'til after you get those other tests..or it might mess up the test results.

Please take care....so many of us have been exactly where you are right now,but just remember it's your health and quality of life that's being compromised so don't be afraid to Tell the dr. you want and need those tests.I was at 279 when my dr. found my deficiency...my MMA test was 415(normal range was 90-278),but my homocysteine and folic acid(red folate) were fine.So my B12 level was 279 and yours is 272...pretty close,huh?

I wish you the best and hope you get those tests done!The longer it goes undiagnosed the more symptoms you'll get and worsening of your current symptoms...so don't wait...take care...and please post back!

Re: Vitamin B12 deficiency and extremely tired - the injections don't help much

scout, thankyou very much for your reply! its so good to hear someone agree that there is something wrong with me and its not all in my head!!

by ME i meant ME! other wise known as chronic fatigue syndrome... its what my doctors put it down to as she couldnt find anything out of range in the basic tests to account for my exhaution.

i dont know what you mean by glossy tongue... my tongue is kind of furry and yes i do occasionally have trouble swallowing but not very frequently.
also pins and needles - sometimes yes.

i dont know where you got my age from! but im only 21... could it really be peri-menopause!!?

im going to try my hardest to push for those tests, i think i may need to change doctors as this one is just not doing anything for me... i had to push for the b12 test in the first place becasue she said my b12 would be fine as my FBC was fine and my cells wernt enlarged or something like that! so she'll prbably just say that again.

but nothing else has come up in my tests... other than candida but i think thats a seperate issue.... B12 deficiency is the only thing left that makes sense.. i just want an answer.. my health has been getting worse and worse and im afraid that if it is b12 which has been untreated for so long that it may have casued irreversable damage